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  • Help with Early Signs of TS

    Our son is 5, wondering about early signs of TS in case he has it (50% chance of inheriting it). He does repetitive fingers to mouth and sucking on them some, plucks at his lip, last night I pulled one hand do an to see what he'd do and his other hand went straight to his mouth. It's worse when he's nervous. Also wonder if anyone has seen a link between TS and nightmares? He started them at 3 days after birth!! And had about three a week for years, thankfully lessening as he recognizes he's just dreaming. He talks in his sleep a LOT, are any of these early TS signs? He certainly has anxiety issues, won't leave the yard to go for a walk with me due to whatever irrational stuff is going on for him. Makes life a challenge with these anxieties. Any leads on early signs would be super, all I read says wait to see definite tics develop but I have been doing that for 5 years now and given he's started school and his dad's life was hell due to TS teasing about tics and has many social emotional issues, I want to help my son the earlier the better to have a better quality of life. So many thanks for your help!

  • #2
    Re: Help with Early Signs of TS

    Welcome to the Forum ElleEm! Thank you for joining us. Hope you will find the information and support you might need in helping your son.

    You've raised some very interesting questions about the observations you've made in your son's behaviours and symptom patterns.

    I'd like to point you to the following resource articles that should provide you with some insights into the relationship of sleep disorders, TS and the often associated disorder ADHD:

    Sleep Disorders : Tourette Syndrome Leslie E. Packer, PhD

    Decreased sleep quality and increased sleep related movements in patients with Tourette's syndrome

    Studying the Connection between Tourette Syndrome and Sleep Problems :: Nationwide Children's Hospital


    For your convenience I've attached PDF copies of these articles to the post so you can download / print / save them if you wish to share them with your son's doctor.

    I would also urge you to check out one of my favorite resource sites, that deals with ADHD, but the information is relevant to kids with Tourette as well in many cases. Enter the following search terms in Google: additude sleep adhd and read the various articles on sleep on ADDitude Magazine.

    It's worse when he's nervous.
    While Tourette tics are involuntary, they are influenced by the environment; those environmental factors can be internal (stress, fatigue, anxiety, excitement) or external (people, places situations) that exacerbate tics in a predictable way. Environmental factors don't cause tics, but rather can influence them, positively or negatively.

    Behavioural therapists now teach strategies to kids with Tourette (aged 10 +) to mitigate, avoid or manage environmental factors).

    his dad's life was hell due to TS teasing about tics
    Thanks to your interest in his symptoms at an early age, you can be your son's best advocate by teaching him how to communicate about his symptoms to others, to eventually advocate on his own behalf and to negotiate accommodations for his special needs, if and when necessary.

    These are all skills that can be learned at an early age that can preclude the kinds of unpleasant experiences your husband had endured as well as many of us adults who grew up in an era when there was much less, if any Tourette awareness.

    Is your son being followed by a medical professional for his symptoms at this time?
    Attached Files
    Steve
    TouretteLinks Forum

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    • #3
      Re: Help with Early Signs of TS

      Steve, just awesome all the info you have posted! So many thanks for the time you put into all the replies! I shall follow up on all of them! At this point we have not had any Drs involved, but suppose perhaps we should look at that too. Thanks again!!

      Comment


      • #4
        Re: Help with Early Signs of TS

        At this point we have not had any Drs involved, but suppose perhaps we should look at that too.
        Yes, that would be the wise course.

        It's likely that at the age of five, a Tourette specialist might not make a definitive diagnosis, but rather make a "provisional diagnosis" in order to follw the progression of symptoms over an extended period of time.

        In preparation for such a consultation, it helps to prepare a diary of your son's symptoms from when they first started, how they evolved and factors you notice that increase /decrease tic intensity and frequency.

        It also helps to bring videos of his symptoms, taken discreetly, of course, to avoid your son feeling embarrassed. It's not uncommon for children to suppress tics when being seen by the doctor, so whatever you can provide for the doctor's observation will help.

        Please see:

        Tourette Syndrome and DSM-5

        DSM-5 Diagnostic Criteria For Tourette Disorder

        Diagnosing Tic Disorders
        Steve
        TouretteLinks Forum

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        • #5
          Re: Help with Early Signs of TS

          Phenomenal Steve, so appreciate all of this! Just perfect! Many blessings!

          Comment


          • #6
            Re: Help with Early Signs of TS

            Hi ElleEm!

            Sorry to hear about your son's nightmares. Does your son sleep alone, in a room by himself? If so, it's possible that that could be the cause of his scary dreams. It was for me, as a child. If he's afraid of being alone in the dark, maybe you could arrange for him to sleep with a sibling or family pet.

            About your son's chances of inheriting Tourette, it's actually less than 50%, assuming you don't have Tourette also, because not all children of people with Tourette will inherit the syndrome. Definitely a good thing to be proactive about, though!

            Welcome to the Forum!

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            • #7
              Re: Help with Early Signs of TS

              Hi Twidget! Thanks for your thoughtful comments! We do the family bed thing so he has tons of comfort through the night--couldn't have more, so the nightmares are not something we can help any more than we are. Great suggestion tho

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              • #8
                Re: Help with Early Signs of TS

                Oh, that's great that your family sleeps together, ElleEm - best way for a child to sleep, imo!

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                • #9
                  Re: Help with Early Signs of TS

                  Thanks Twidget! And thanks for welcoming me! I don't have Tourette, my husband fits all the criteria though haven't had a specialist so a diagnosis yet. My understanding is even if the syndrome isn't expressed, it can be passed on and our offspring have a 50% likelihood of getting the genetics for it? Something like that. But I've just heard some outgrow it too, which must make life easier for those who do outgrow it!

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                  • #10
                    Re: Help with Early Signs of TS

                    ElleEm, to the best of my knowledge, the genetics of Tourette is not understood very well at this point, but is known to be a bit complicated, involving genes on several chromosomes. Last I read, however, it is known to be autosomal dominant, meaning that 1) the genes are on other chromosomes, rather than the X or Y (autosomal), and 2) you can (but not necessarily will) inherit Tourette even if only one parent carries the genes (dominant).

                    If this is right, then when you say that your son has a 50/50 chance of inheritance you may be correct. Especially if your TS specialist or geneticist told you this!

                    It's certainly an interesting question; there must be statistics on the number of children born in families with one parent with Tourette who inherit and manifest the actual syndrome, not just the genes. Couples wanting to have children must want to know. Steve, do you know the stats for this, or have a link handy?

                    Sorry if my answer was confusing. I was thinking of the fact (?) that most children born in families where one parent has Tourette don't exhibit the symptoms.

                    About outgrowing Tourette, that's right, many people do. I believe about one out of three are symptom free by adulthood, another third will still have symptoms, but not as severe, and in one third the symptoms stay the same or get worse. And, yes, life is easier for those in the first two groups! I'm in the second group, and hope your son will not be in the third, if it turns out he has Tourette. At least the statistics for this are on his side!

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                    • #11
                      Re: Help with Early Signs of TS

                      Thanks Twidget! Great to have some encouraging stats on Tourette! Appreciate your thoughtful replies!

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                      • #12
                        Re: Help with Early Signs of TS

                        Originally posted by Twidget View Post


                        About outgrowing Tourette, that's right, many people do. I believe about one out of three are symptom free by adulthood, another third will still have symptoms, but not as severe, and in one third the symptoms stay the same or get worse. And, yes, life is easier for those in the first two groups! I'm in the second group, and hope your son will not be in the third, if it turns out he has Tourette. At least the statistics for this are on his side!

                        Twidget does this apply to just the tics or all the + symptoms as well?
                        thanks

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                        • #13
                          Re: Help with Early Signs of TS

                          John,

                          If I may elaborate on Twidget's comment, she is referring to the frequently cited "rule of thirds" that seems to describe the progression of Tourette tics.

                          The rule of thirds is referred to by Dr. Lawrence Brown in his NJCTS webinar in April 2014, perhaps one of the most informative and comprehensive overviews of TS and learning disability comorbidities I have seen, which you can download in its entirety from the NJCTS archives.

                          Here is Dr. Brown's slide:

                          TS Rule Thirds Brown NJCTS Webinar.jpg

                          As you can see the rule of thirds applies to the progression of tics, and not to associated disorders. Associated disorders like OCD, ADHD, mood and anxiety disorders and others can be lifelong, and should not be ignored in the early years. The associated disorders can become more problematic than the tics in potentially causing impairment in later life.

                          Access and view the entire webinar by Dr. Lawrence Brown
                          Steve
                          TouretteLinks Forum

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                          • #14
                            Re: Help with Early Signs of TS

                            Great clarification Steve, helps me too, thanks!

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